Just joined the community today. Being such a rare tumor, it's hard to find a place where you can have a good discussion with people who understand. Hope it's not too much of an info dump below:
My original ameloblastoma diagnosis was in 2007. Even getting a diagnosis from the biopsy took forever. The oral surgeon initially wanted to perform a resection and titanium plate, we settled on removing the tumor and as much margin as possible while keeping the basis for a normal mandible. Lost 2 teeth. After initial healing, had an autologous bone graft (from far back on my mandible, behind the last tooth), followed by 2 dental implants. After 5 years of followup panoramic X-rays I was pronounced "cured" and told I didn't need to keep up with the panos.
Looking back, that was a mistake – I should have pushed for an annual pano. Based on the pano I had at my dentist a couple of weeks ago, it's very likely back – but in two locations. I still don't regret having conservative surgery, but if the regrowth had been caught sooner/smaller it would have been easier to deal with.
Consulted with an oral surgeon already, now waiting to get the biopsies done and a confirmed diagnosis.
I've asked for genetic screening of the tumor – it appears that the majority of mandibular ameloblastomas are associated with the BRAF V600E mutation, and there are FDA approved drug treatments for some BRAF V600E initiated tumors: combined Dabrafenib-Tratmetinib. Unfortunately outside some very limited studies, nobody seems to be taking drug treatment approach. US studies have basically been 1-patient case studies. Biggest study I could find was 12 patients in Israel. Literally 100% of them had significant tumor shrinkage within 8 weeks. 10 of them had switched from a planned resection to jaw preservation surgery – and the other two were not far behind, likely to switch as well.
It seems to me that there really should be more effort in taking an oncology/drug approach to treating ameloblastomas, rather than an approach of pushing for radical surgery as a first line treatment.